Wednesday, May 11, 2016

Stop Scaring Mommy! - May 11th, 2016

This morning I noticed that your head was much better than last night. The fontanel wasn't sunken in at all, and your sutures were visible, but not as much as last night. I still spoke with the nurse and NP about it just incase something were to happen again. The NP said that it was up to me and your nurse, but if we wanted to turn down your cannula from 2 to 1, we could. The nurse said that she was going to keep it at 2 until your next care just incase.
I held you as your feeding was going in. After your feeding was over, I planned on holding you until about 10:50. A little bit after your feeding ended, you started coughing and vomited. Then you vomited again and no one ever answers the call button when I press it so I yelled to your nurse. She was able to get me stuff to clean you up and stood there for a bit to make sure that you were okay. After she left, about 10 minutes later, you vomited again. This time she didn't respond when I called her, so I yelled out the NP's name. She came and I told her this was the third time this happened and you never vomit this much. She was trying to think if anything was new in the past few days, and nothing was new. I was already holding you at an incline because of your reflux (that is supposed to help). She said that she was going to continue to watch you to see if it was a one time thing.
I was afraid to put you back in your bed, but when it was 11, I had to put you back.
We did your care at 11:30 and then I left to go get you some nail clippers and a book that the developmental specialist suggested that I bring in. She suggested that I bring in a black and white book and show it to you while you are awake. She told me to let you focus on the page, and then once you were focused to move it to the left a little bit to have you follow it. Then she said to move it back midline, and then to the right.
I did a few things at home so that I didn't have to do them tonight when I got back from the hospital (maybe I will be able to go to bed a little earlier). I kept thinking about how you were doing and hoping that you didn't vomit at all. You definitely like to keep us all on our toes.
When I got back to the hospital, the nurse said you were good and that you didn't vomit at all. I held you after your 2:30 care, hoping the same would be true. You slept good on me for a while and then you made the face like you were going to throw up again. I immediately yelled for your nurse who did not respond, but luckily you didn't end up throwing up. That is when I realized it is probably your reflux and nothing more.
At your 5:30 care, I took care of your diaper and your temperature, and then I went home so that I could eat dinner. I am getting a little better at leaving some time to do some things around the house. However, I don't like leaving for too long, as I will never get this time with you back.
When I told daddy about you this morning, he wanted the doctor at Virtua to call your neurosurgeon at CHOP. The vomiting was one sign of the shunt malfunctioning. However, the doctor said that you do not have any other signs of the shunt malfunctioning, so she didn't want to contact the neurosurgeon just yet. She said that she would do an ultrasound of your head tomorrow, and if needed, she will contact the neurosurgeon. She did not want to do the ultrasound today because you had your last dose of Lasix.
Tomorrow or Friday they will do more blood work to see about your hemoglobin. Your color has been much better, so maybe your body finally decided to start making blood cells. Lets hope!! Other than that and your ultrasound tomorrow, you should be able to rest the rest of the week and weekend.
For all of you that pray, please pray that Mason's body started making its own red blood cells so we don't have to do a blood transfusion and wait even longer for his body to start making them on its own. Please pray that the ultrasound of his head comes back normal, and there is no over draining or malfunctioning of the shunt. Please pray that the medicine finally starts helping his reflux as well.
Mommy and daddy love you and we will see you tomorrow. We hope you have a nice and relaxing night without any issues. Stay strong, we know how much of a fighter you are!